Off to tumor surgery

johnt

i know all will be well pleeeease let me know what happens today.led zepplin is a good choice!!!!! joelene

Ditto what Judith said.  We'll be anxious to hear from you.

Peace and prayers,

Connie

John

I ditto everyone else's thoughts and prayers. Hope that you get some good snoozing. Please keep us posted.

Lucy

PinkGrandma:

Thanks for the boost on the other channel. I'll have to pay more attention to dates and times. Or take more Zink.

june

John
ditto on LaBunna's post am starting to worry also
Joelene

Hi all,

I hope that all is well with everyone. Here, it is a week of the most beautiful weather imaginable. I wish I had my sailboat in the water. Then I could be listening to Jimmy Buffet with spray coming over the bow onto my face.

It's been an exciting day here in paradise. My appointment regarding the biopsy was at 1pm. The results came back as expected (not as hoped) and the verdict is that I have a treatable 2x5" throat / lymph node tumor of Squamous cell carcinoma. Although I will not meet with the oncology team until next week, initial thought is that it is not operable so it probably will be radiation / chemo therapy. My low platelet count and the tumor configuration are serious complications, as is the fact that Squamous often comes back.

Needless to say, I had to call my transplant team since I will be ineligible for a transplant until the cancer is neutralized. My MELD is low so it shouldn't set me back too far. The phone rang every 15 minutes all afternoon. Even my last ex-wife, who owns a health-related company, heard the news and called. Not a good sign for a positive outcome. (She's really quite sweet and wouldn't wish me ill, so her concern could be considered an ill omen)

It took the IRS getting out of line to trigger me into learning enough law to sue them as my own attorney and win (I made them settle on April 15th for the press coverage), so I guess this should trigger me into learning enough medicine to navigate the medical system. My friends say that those two stories are books that I should write. Anyway, I thought I already knew too much about health care with this Hep A, B, C and ESLD thing. Oh well, there's always something.

This new research just gives me a new hobby, made even more challenging with the encephalopathy. I could learn the same thing over, and over, and over. Hmmm, I may want to think about keeping better notes. Or find a really cute secretary who will work for peanuts, or room and board.

So you ask, how am I? Except for short bursts of internalized anger, I am pretty fatalistic about it. Not in the sense that life is scripted for us by the maker, because I believe that free will is the gift given to us that puts us apart from the angels, but fatalistic in accepting that I am, and have been, and hopefully will still be, blessed beyond belief. I think that I will overcome this -- but if I don't, I can't complain about my life, my loves, and my experiences. Enough of this touchy-feely rumination -- I should be making football metaphors -- this is the season, and football is my sport.

But now I'm off for a stiff double-shot of lactulose. I may swig it directly from the bottle. Maybe there's a little wild left in me after all. Down and dirty Rolling Stones tonight; and not at the usual low volume that puts me to sleep! Just loud enough to rattle the nightstands.

Be well, John

John

I am so sorry that your biopsy report was not the news you were expecting. I can understand your feelings of anger and grief over this news, you have had so little time to really digest all this information. However I know you are a fighter and this is just one more battle. The war is long from over for you or any of us. If Mick Jagger can still get on stage and shake his bootie then so can the rest of us.
Since you have mentioned "the season" I must confess that I too am a "football freak". I am looking forward to many "spirited" and "philosphical" conversations regarding our respective teams.

Hope you shook the rafters tonight. My continued thoughts are with you.

Lucy

John, this is not the news we wanted to hear, but you can overcome it, my friend, of that I'm sure!  Hey, remember me?  Liver cancer one-foot-in-the-grave?  But here I am, cancer free!  Now, I will tell you that if you have radiation it will burn the hell out of your throat.  So while you're still able to eat, go to it.  Enjoy some pie a la mode, hot fudge sundaes, and whatever else you desire.  Because weight loss is guaranteed.

Big hugs,

Connie

John
just read your post cant believe it, but you know better than anyone thats what this disease like to do.It throws as many punches as it can at you.You have to be stronger and keep fighting back! So get yourself that cute little secretary,turn the music up,get a friend to help you take the boat out and fight.As a matter of fact I think you should write a book about it all. You can use your posts they are heartwarming and funny,and would help others get thru this Take care and hugs Joelene

John, Just want you to know that my prayers are with you. I am sure you are going to overcome this.

Hello John, I am so glad that you have so many friends and family offering to help you through this. As far has the wind in your sails......your virtual family will be more than happy to keep blowing your sails. Shoot... our Florida cyber family can send you some of tropical storm Faye to fill your sails.

Don't worry about being off topic with your battle......you still have ESLD and as such you are a card carrying member of our forum.

I am partial to California winters also.......but then again living here all my life .....makes me partial. So if you do end up wintering here let me know.

Lot's of thoughts and prayers............

Hi PG and Connie,

Thanks for the positive thoughts and advice. The tumor seems really aggressive so I'm trying to move my consult up a day or two.

PG - I really miss CA and the weather. My early adult life was there; my daughter was born there and went to Cal State, Chico. After Hollywood, I had a beach place in Ventura and a redwoods cabin in Sonoma -- spoiled, huh? I didn't even mind being in the center of the '71 quake, the Northridge fires, or watching the Valley's year-plus natural gas fire plume. No tsunamis, though. I hope your closing is soon - best on the new house.

Connie - My parents live only a few miles from AZ Mayo so it is in consideration. I wish I were in dreamland but it's only 1am here. I think that you're right -- Bonnie it is.

Time for a Vicodin. The pressure of this tumor is putting serious pressure on my ear and jaw. Half the time, the drug puts me to sleep, the other half, it wires me up. I'll know soon.

Thanks for being here.

Be well, John